PEANUTS

Peanuts: Lucy, Linus, Charlie-Brown & Snoopy. You know. What is it about Peanuts that so many people could relate to, laugh, cry about and keep you wanting more? Cathy Guisewite ( a comic strip cartoonist) said of Charles Schulz (creator of Peanuts) “He gave everyone in the world characters who knew exactly how all of us felt, who made us feel we were never alone…He encouraged us. He commiserated WITH us.” Charles Schulz had compassion and a real understanding of humanity.

As my life unfolds and the lives of those in my family, my friends, my patients, as well as the city I live in, more and more, these last two qualities are the HEART & SOUL of surviving in this world. Life is hard: EVERYONE has battles, and it doesn’t matter whether in your view they are important or “worthy” of attention, love, compassion or time or whether they are not. Look deep into the eyes, make a human connection and yes, speak to people. That one “hello” with a smile may be the BEST thing in another person’s life.

I recently watched a Ted talk: discussing the virtues of talking to strangers. Making conversations (gasp!!!) without some device, creates a connection which may lead to another and another until we have a “world wide web” of people actually connecting and talking for real! I ponder what that would do for our self esteem, our depression, our anxieties, our stereotypes/stigmas, and the list goes on. Do you KNOW your neighbor? Do you KNOW your siblings, your parents, your BFF?

As some of you may know if you’ve read my blogs, I have my own struggles: CKD (and facing dialysis & transplantation once again….), hemochromatosis, on-going skin cancers & operations, medication side effects ++ including diabetes which thankfully I have the determination to keep under control. Then there is life. We all know how that goes, for some pretty good, for others, like myself, we have our fair share plus some  extra.  All that aside, I struggle, I cry, I get overwhelmed, I want to walk away from many things. More and more, the people you expect to be comforting and somewhat of a “stronghold” even if that is just for a few minutes, are really not up to the job. Certainly, I must ponder, where is their compassion/humanity/empathy??

I am trained as a Registered Nurse: even went so far as get my Master’s. Does this matter? Yes and no. The knowledge is GREAT!! I am able to help/guide/facilitate the majority of my patients and they are very grateful, expressing it in many ways. Verbal feedback is still awkward to receive even when I know at a  cerebral level that I am making a difference in their lives, it is still hard to hear. I am working on that and I am letting those comments into my heart and soul to help in my journey.

Compassion and understanding are the essentials of what make people keep going when things are less then desirable. People that can sense when these things are  needed are true angels. I can feeling like just curling up and not want to do anything but stay warm by my fire, inside, where I can cry, scream, read, meditate or just zone out with some great music. Then you get that “ting” or some other audible cue that there is SOMEONE out there that has shared something or is trying to send you a message. I am always glad to hear it & will often go check it out: so happy and a mood changer if it’s a friend or something positive, and conversely, a cold caller, mindless “forward”, etc. just makes me want to recoil more. Back to the actual talking to people: talking to strangers, HEARING friends voices on the phone, and better yet, meeting up with them eyeball to eyeball and having that connection, humanity and share in our commonalities.

This isn’t just “peanuts” we are talking about. There is a richness within all of us, we don’t know about it unless we share of ourselves.

 

Comedic Irony or Blessing

It’s been awhile since I have had the urge to write, but I am broaching new ground. Today I had   a home hemodialysis assessment. This is not something that you are really keen to do or have to do, but there really isn’t much choice now is there? Either you do dialysis or you wait to die in a uremic coma or of a heart attack due to metabolic acidosis. So, being a RN, and being human, being a mother, a wife, and being relatively young…there is no choice for me. I want to live! So, while dialysis is the only choice other than praying for a transplant in a country/province with a dismal donation rate, I’m not holding my breath.

Comedic irony or a blessing: I am involved at work with helping those with all kinds of chronic diseases. As a RN  my job includes managing and help people with living a healthy and meaningful life. However, the irony is that  I dealing with a few   chronic diseases. In many ways it is a blessing as I can REALLY relate to my patients that struggle with the same things I do or any that are similar in terms of effects on quality of life. It wasn’t until a year or so ago that I discovered the concept of grieving in chronic diseases: the loss of the many things or activities that you may be unable to continue with or are limited. It really does change your views on many things in life, love, work, family & friends. Many days you are just happy to get through a day or be happy that you can still manage to work. I think this aspect or managing chronic disease is huge. Just listening to the patients and for myself, try to be reasonable with my expectations and planning so as not to get into that downward spiral into depression. Then there are the days of wondering “why am I still trying to do everything, be everything & everywhere”, when inside you just want to be at home curled up with a warm blanket & your warm bean bag. The disease(s) is one thing but the person, is more than that. Everyone has their snake to kill.

Hope continues for each person in their struggles, even if that hope is something simple and/or comforting. Cuddling with a loved one, have a great visit or coffee date with a friend, managing to get out of bed!!! Hope for a better day, hour, or result. Hope to have more time with family and close friends, hope for better connections with people: meaningful and genuine.

Blessings: yes, with chronic diseases can come blessings and positive outcomes. Like it’s been said so many times, attitude IS everything. It does no good whatsoever sitting around feeling sorry for yourself. There can be so much joy and happiness by continuing to be social, to be involved with other causes or hobbies.  As a RN it is a blessing to be able to really relate and be able to articulate accurately a patient’s experience when they are struggling or unaware of the real impact on their psychological and emotional being. Being genuine as a RN is very rewarding and at times I think it is more valuable than all the other nursing tasks and knowledge. Connecting at a human level and connecting at the heart and soul of another is an extraordinary feeling and privilege.

 

Over the Rainbow

We remember the day we met you for the first time: so small, so fragile, so incredible, so loveable and new. Counting down the days until we could bring you home! The many worries, the planning, reading how to care best for you, what to buy and have ready, how to be a good parent to this little creature that you hoped and dreamed for so long you could think of nothing else. Many trips to the shops to ensure all necessary needs would be met upon arrival. The “nesting” process was in full force.

Then THAT day came!! We brought you home: opening our hearts, our souls, giving all of the best we had and then some. Loving you was easy. Watching you  grow and change: watching for the little changes and developmental progress. Of course, sometimes, not knowing, made further reading or a trip to the doctor. Your health and happiness became the priority above our needs or wants, but this is what you willingly sacrifice for the one’s you love.

The emotional bonding is incredible. You miss them dearly even if you just go away for a few hours, or, heaven forbid, a few days! Your heart aches and longs to be next to you, for cuddle and tease and play and just give love to! Your heart and soul sours heavenward when our eyes would meet and we connected.

Over time, anticipating your needs, wants, your non-verbals were replaced when you spoke your first word! What a day! Such delight and excitement and oh so damn cute!! Every day you were encouraged to become all your could be, socializing, time our at the park, enjoying  birthday treats and parties, the company of friends and family.

The best was always for you our precious princess.  Our time with you will always be remembered as precious.

Over the RAINBOW: We see your smile, your strength, your beauty, and remember that we all lost a piece of our heart and souls the day you went over the rainbow.

Over the rainbow, our little girl

Enjoying life with others

I’ve been living this life for as long as my 25 year old daughter has been 1 yr. That’s a lifetime. I have found that you can’t dwell on the myriad of health issues and complexity of health needs, but rather, need to enjoy what you can. I have found and really enjoy and have a passion for photography. I don’t claim to be a professional, but I think I do alright and have learned a lot about this skill, hobby , and potential business opportunity. I have met a great bunch of people that share the same interests and love to see how others will photography the same thing but each will be different. This hobby lets you see the world differently and interpret it according to you, your day, your mood or more importantly, your inspiration. I have met some people that normally would likely never meet, which is great, because I have been able to see others different from me but see their passions and gifts all the while getting to know about them: a definite plus!

If my energy level is good and the ol’ bone marrow is working, dancing is another activity that I absolutely love!!! The music, the moving, the expression in dance , the mood and various rhythms of the dances takes your body and soul in different states of mind. There is nothing like dancing with a partner and you’re in sync! The ease with which you can move around the dance floor is fantastic. I can’t get enough, even though I may be exhausted, I just want to dance all night!

The grind of CKD and other chronic diseases entails many appointments, many blood tests, testing which becomes really intense when facing possible transplant or starting some form of dialysis. Both the options involves including others: Dr’s , RNs, NPs, RDs, surgeons, anesthetics on the health front, but there is also your family who’s lives are intertwined with yours. You need the input and help of all of these people to continue to enjoy your life, although this will mean changes. Surrounding yourself with positive and up-lifting people is key. You have enough on your plate without having to deal with constant “debbie downers”. Manage this and you will still have good quality of life. Connecting with others gives us so many positives and stimulates ideas, conversations and new points of interest or viewpoints.

No matter what is going on with your health, surround yourself with human contact.Make the best of things and have that Kodak moment as often as you can. After all, life is not measured by the number of breaths we take, but by the moments that take our breath away.

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Walking the Mall

Have you ever found yourself wander through a mall? You don’t have a list, you don’t need or want anything but you go because you’re restless, at loose ends, bored perhaps? You want to feel like you part of society or at least still able to feel the vibes of life and soak that up a bit. so you go the mall and start to wander and ponder. You wander up and down, stopping here and there when something catches your eye or you’re just curious. There is no agenda, there are no thoughts or concrete decisions: just wandering to see if you can find some sort of deal or “treasure”. Then, there comes a point when you are just not interested in continuing to comb the mall. Your legs are tired, the feet are sore, and now you just have this need to get the hell out and go home, but then you discover you are far from the exit you came in are now have to look for the closest directory, just to find you are the opposite end of where you want to be….more walking. I just want to go home, it was fun while it lasted.

No, I haven’t been to the mall lately, but I do however feel like I am wandering: searching for something that I can’t quite find. Let me fill you in a bit. I recently went to a class to find out more information about “kidney choices, aka, hemo or peritoneal dialysis”. They give a good info session, but they can’t answer the real “nitty gritty” of living with either of the choices. Whichever you chose, this is it: that’s what you do EVERY DAY of your life for the rest of your life or until you either die or get transplanted. Of course, there are pro’s and con’s to each. It boils down to do you want to live or die? You wanna live? Great! You will need an operation any which way you go. There is less pain with PD as at least you don’t have to “needle” yourself daily and you just end up with a big tummy, a little “hose” hanging our of your abdomen (no more bikini days….AND this mean more mall walking because none of my clothes with fit), the chance of organ prolapse because I’m female, menopausal, etc. and lastly, at risk for peritonitis. If that’s not up your alley, or for some reason you can’t have PD, there is hemodialysis. Yes, it has come a long way since the first “run”, but you still have to “needle” every day, which means chances of infection, having your home modified for the machine and the water supply.

The unknown is a scarey a place. I am wandering in unknown territory for me. Being a RN is not helping. You may think that strange, but because of my training, experience and knowledge, I tend to remove the emotional side of all of this until I can’t bear it any longer: like today.  The impending changes are just too much to wrap my emotions and life around. How will I FEEL?? Will I still be able to work? What will my quality of life be like?? Will I feel like walking like I do now, going to the gym? I already know my diet is going to not be so great ( All I can think of is applesauce and more applesauce). There are too many unknowns and the change is going to be huge. I’m sure I’ll get through as many have done, but at what cost? I already have days when I’d rather just curl up and have nothing to do with anything/anyone or time when I just want to be sedated so I can sleep without having to be up, worry, have cramps, have other issues that keep me from sleeping well. No, I am not suicidal. Just very tired of dealing with this thing we call “life”.

Yesterday was not a good day, having heard some sad news from a friend just seemed to tip my emotional “put togetherness” off. It was really difficult to get through my day at work to the point where I just had to get outside for a walk. Then when I finally got home I drove into my garage and sat in the car a bawled. I had just so much pent up emotions and energy that that purgative bawling was good. Then I was able to put my shorts on and some runners and go for a long walk until my legs were going to give out. This is what I needed. A good cry and some sunshine and fitness. I think today will be better.

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If I Knew Then What I Know Now…

I think I can do some reflecting now that I have passed that half century mark. I ponder the influences of my childhood: not just parenting but friends, neighbourhood, siblings, societal impacts, education, religion and my own internal struggles. I know I was very fortunate to born into a family with two parents, 2 incomes, a family with strong values (even though those things were not verbalized, but rather demonstrated in day to day activities), a sense of groundedness (that being a faith in God) and a sense of you are who you are, and you deal face your challenges head on.

Tough love: yup, that’s what I grew up with. I remember getting a heck of a hiding when I was 5 minutes late getting back home as a child ( about 5 or 6yrs) because my parents told me not to go anywhere as we were packing the car to go somewhere. I just wandered up the street 2 doors. That taught me to mind their word and be on time/punctual. If you’re told something by someone in authority, you don’t ask questions, you just do it. Like dear ol’ Dad would say, “you don’t ask why? you say how high?” Was it harsh? Looking back, perhaps, but more importantly, it produced children that knew what was right, what was wrong, we had manners, valued hard work, and all that other “baby boomer” stereotypical banter. This begs the question, “How did this influence my up-bringing of my child?”.  Well, what’s “good enough for momma, is good enough for you”. For the most part, my childhood experiences and what I learned in my nursing training and just general awareness made me a somewhat softer “tough love” approach. What I do know now, that I didn’t know then, was that my only child would be raised well, have a good sense of who she is, her place in this world, have self-confidence and be a functioning adult that can speak her mind and stand up for herself and others that cannot. I don’t think that will change as I age.

Career choices and making life decisions when only 18 or 19 years old. Interestingly, as I reflect back on my experiences and the choices I made, I think I would have done much the same. I’ve always enjoyed being around people. When growing up, we moved a fair bit so was never settled in one place, and to this day I do not have a “home town”. A guess a bit like a nomad, without any sheep….But I digress. I still have not come to a conclusion about my Dad being an alcoholic and eventually dying of lung cancer due to his long history of smoking and drinking as to whether that influenced myself in the direction I choice in College and University. I started off thinking Psychology would be a good career. I did love people, I liked to be helpful, I knew I could relate to people. A year down the road, I was not prepared to be in university for 7 years, so made the switch to nursing, after all, you get psychology within nursing. I am goal driven, so I was on a role. I really enjoyed it, as nursing is/was very task oriented: many skills were learned in my journey to be able to care for patients and perform the many procedure during a day on the wards. My nursing now a days has changed a lot since the 1980’s and for the better. Holistic nursing: looking at the person, not the disease and focusing on THEIR health priorities is key. This knowledge and way of providing care is much superior to what I was taught, but I must say I would not appreciate and understand the complexities of this skill set if it wasn’t for my experiences on the wards and in acute care.

Hobbies: I never spent any time on hobbies until just recently. I was so career and knowledge driven, that I neglected relaxing or enjoyable hobbies that can take you away from stress, thinking, processing, relating, and all the rest of things that we do everyday. In retrospect, I should’ve taken the time to spent more “me time”, but as a young woman with a career that is demanding, a young child and that ever present societal norm of achieving in a material sense, that priority or need was negated. Now, I sit and think what if? Well, we all know that doesn’t do any good, so I try to do better and enjoy the things I do enjoy to balance my life. Making time for friends, visiting/calling my Mom, enjoying and learning my photography. The fun and peace I find behind the camera is wonderful therapy.  The whole world just stops and slows down. I can picture the world as I see it. I can make it a harsh reality or a soft, comforting image. Yes, if I knew then, what I know now, I would’ve started this 20 years ago. Who knows, I could’ve been a National Geographic photographer!!

The whole process of looking at our lives and thinking about what we know now vs. what we didn’t back then it as tried and true and tested as ever. Life is about decisions, getting up when you are knocked down, determining what kind of person you are molded to be in the end. Yes, life is that great teacher or mentor and the more of it you experience and try, the better your life will be and the better your stories for your grandkids!!

 

 

Beauty

I was reminded the other night about “beauty” being only skin deep. Yes, it is true. I was attending a meeting with other ladies and one of them read us a short devotional if you will. The topic was “beauty” and discussed what we all know: that:  being  that beauty is considered in that which gives us pleasure or is pleasing. That got me to thinking about it.

As a society, we value beauty, not just in our bodies/faces but also in our surroundings. You mention the word beauty or beautiful to anyone and they will picture something or someone different from you. Ahhh, yes, beauty is in the eye of the beholder, right? There is such variance as I think of that tribe in Africa that sees beauty in a long neck: girls start to wear these metal neck rings to ensure their necks are elongated, the Japanese at one point thought/valued small feet and women would bind their feet and became deformed, some think piercings and tattoos are beautiful, others like make up, hair dyes, etc. We certainly know that people are willing to spend their hard earned money on cosmetics, plastic surgeries, botox, body building, tanning and the list goes on. How can you not when you are continually bombarded with images and messages, some outright and others sublime. That just considered the people, there is a whole other realm of beauty to be had in our homes, in our gardens/yards, communities, cities and the world over. Don’t get me wrong I like pleasing things just as much as the next guy, I just get the idea that beauty is only skin deep meaning that beauty is something more than superficiality.

For instance, take the blind or visually impaired: how do they describe or experience beauty? Obviously, it is not something they can see, but rather something else they must sense: I would think their sense of beauty would lie in sounds, smells and touch/taste. We talk about our “mind’s eye”, which I think is what we picture in our minds, but how can this be for someone whom has never seen anything?? What do they picture?

There are so many interpretations or views of what is beauty: Take a look at these photos. These are considered beautiful images of women, which is truly beautiful?

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As I go through life, I realize superficial beauty is a wonderful thing if you have it, but if you don’t (according to society, or even your friends) it doesn’t mean you don’t embody beauty. When I look at photos or images of people, I gravitate towards the eyes and the laugh/smile. Why? Because they usually can’t lie. I think beauty is something we also carry inside and is shown to the world by our eyes, our smiles, our laughter our hearts and souls (our actions or words).  Maybe we have a wart on the end of our nose, maybe we have bad acne, maybe we have scars or burns. We have beauty inside which can emminate outwards. As women, we have many roles, many important parts to play individually, as a spouse/partner, as a mother, sister, friend, etc, and the list goes on. Society would lead us to believe our worth is in something so superficial that the least blemish will send teens and perhaps younger now into a panic!! Lord help them when they are faced with something that is potentially scarring: whether to her external beauty or to her internal psyche. The latter of course being much more damming. For me, with my journey of aging, and this on-going battle with skin cancers, I have had to let go of the societal image of beauty and be a better beautiful person. Every day is a new day and I am thankful to have the health I do and am still able to enjoy much of life.

My world through the lense:

Looking the lens of my camera makes my work manageable and beautiful if I chose or I can make a statement of impact. Photography is a wonderful hobby and potential cash maker, if you work hard enough, practice long enough and in the correct way, using your equipment correctly and actually read the manual(s)!! But, grabbing the camera for a morning or even a hour and just get away from the every day has such worth for me in terms of fun, socialization, meeting new people, connecting with life minds, learning and growing together.

There is such a feeling of calmness, possibilities, and excitement at what may be and the push to do something different! Just get out and shoot. Have a goal: my present goal is to continue working with my equipment and become more comfortable if off camera flash and actually DO fill flash. I have done several natural light photos which I do prefer that “earthy” soft light. I dream of being able to take those photographs that make you stop and think , “wow, that is  such a great capture, so creative”!! It makes me slow down and breath, enjoy what I am photographing and have some fun.

This hobbies which has led me to meet many fantastic people with varied talents and knowledge which is a real blessing.

Chronic kidney disease (CKD) is a pain in the assets, if you know what I mean. All the scheduled appointments, labs, scans, Drs, RNs, RDs, and list seems to go on a bit too long! I recently found a new GP accepting new patients so was on the phone PDQ to get a “meet & greet”. Of course, being a RN, I went prepared with all my medications listed with doses and frequencies as well as a list of all my specialist Drs that I see for x, y, & z. Za, & others PRN. ? Of course, first question was, “do you take any medication?”

Me: I sure do and here is the list along with all my Drs/specialist ( it was a full page typed out on WORD doc.  It would not be complete with out family history and present medical history…At the end of the visit I had to know, :So, you game to take me on??”. I’m still there, so its all good.

You’re probably thing this has nothing to do with photography, well , yes, it does. Let me explain. My usual life is taken up with varying degrees of reality, keeping myself on track with many different aspects ( of course keeping in mind all the dos’& don’ts, etc. and then at work I do exactly the same for the many people I see for their chronic disease management. I’ve often thought that their lives, their stories/experiences could be so well documented with out a word by photos rather. Similar to the “People of New York” that is popular, we could make our own Photobook: the People Close to Our Hearts and Souls.

Of course, photography is not ever considered during health matters as this usually is because the person has hit a rough patch in life and has lost hope, become depressed or overwhelmed, burned out, etc. I think that seeing the “reality” of people where they are makes them better understood and lets us as clinics have a brief glimpse into their lives which we are trying to help with and change. We all know change is always a tough thing because very often we have to look at OURSELVES and see if there is something that we can be doing differently. Do we/I know about my patients: their lifes, jobs? children, sandwich generation? poverty, poor reading/writing, where they live, etc??

Photography is so powerful in showing emotions, every day activities, general community activity and the people that life there.

 

 

Watching the Wheels…

Watching the wheels churn, which applies figuratively to many things in life. There is the daily grind, the wheel of health, the wheel of public policy, and so on. For those of us with chronic diseases, we have our own “wheel” and this is imbedded in the health care system. Due to the fact that many  diseases need constant monitoring can make you feel like your forever seeing Drs, RNs, dieticians, more Drs and having more and more tests. When you have CKD like myself, there are so many things they want to keep track of: creatinine levels, blood counts/anemia, bone health, Magnesium, calcium levels, phosphates, albumin in blood and urine, plus the numerous special testing they need to do to judge your antibody levels in the transplant work up just to name a few. Then, if you’re real lucky, you will have other diseases that compound this process which necessitates more medications, adjustments, more testing, more treatments which then spits you into a new regime of follow up. It just seem endless!

I remember looking at my calendar one month and I think EVERY day off I had from work I was seeing different Drs, having blood work, or having a treatment in hospital. No wonder I was ready to jump off that wheel of wonderful and have a little “down time”. Crazy! It also made me think of my Dad: he was a minister in the United Church. As a kid, I remember one day walking by and looking at his appointment book. I don’t remember any empty spaces in it for an entire month!! It makes me think of how we just trundle along, doing what we do, not really thinking about the big picture. For me, during the rough patches, I would have to just go one day at a time for to look beyond that, was just too overwhelming. You start to micro-manage and compartmentalize your life.

I just watched a movie trailer called “The Abundance Factor”. The movie brought to light many truths about the lives we chose and what power really do have. The main theme appeared to be that life is what you make it, starting with what you say to yourself every day! So its all in your head!! I’ve always said that attitude is the thing in life that will either serve you well or not. The movie also pointed out that maybe the “norm” is not for you (they talked about the societal belief that you went to school, got high marks so you could get a good job, make good money, etc, etc) and that maybe your happiness doesn’t lie in working yourself and stressing about things that don’t make you happy. This of course doesn’t mean you should caution to the wind and abandon reasonable choices. Living with CKD (as others with other diseases) forces you to come to terms with what you really want out of your life: what is important to you. Some of us still take a while to see this…I was that generation that had it pounded into them that success and happiness are linked. Happiness and success was about achieving status, financial security (actually more than that: it wasn’t enough to be secure, but be very comfortable). Yes, it is important to have some of these means to ensure health, but as I progress in age, diseases, and hopefully wisdom, these things are not so important. That wheel of happiness is not all its cracked up to be. I’ve missed out on sleep, time with family and friends, being able to pursue hobbies like I would like, and develop more of ME.

Being in the CKD wheel also makes you want to stop the madness even if its just for a week. How fantastic it would be to go through a day with NO PILLS to take, no needle pokes, to get a full night’s sleep without stressing that you’re getting enough sleep so you will be on your game the next day at work. Extend that out to a week or even better, a month!!! What a holiday that would be. Recently, there was a change in the amount of protein that I leak through the kidneys so I had to change one of my medication doses (increase) and with that was the request to repeat my labs in a week…Yeah, that didn’t happen. First of all, “repeating my labs” means 3 tubes of blood and urine again for the umpteenth time…for what?? It is a waste of my blood, time, and the dollars  in healthcare to process all the other blood work on there that doesn’t need to be repeated. If they are concerned that I might lose too much potassium, well, I know what that feels like so would just eat a banana or orange or two. No this isn’t optimal and certainly NOT what I would advise a patient, but this is me. I will do the labs, but not for a couple more weeks when I go back to see nephrology in follow up. I just get tired of having to schedule my time and life around lab appointments, work, fun, Dr visits, etc.  I just want to be normal and live the good life!

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